Palmoplantar pustulosis (PPP)

Hey I 'm new here but have had extesive experiance with Palmoplantar pustulosis (PPP). I got it about 16 years ago and my kook doc here in japan put me on a steriod course. Now he's gone and I got a new doc and the same old crap, no info., no this or that. I am in the dumps. But biotin did work. Anybody please if you have anything abt ppp. Thanks, ugly feet and hands but a heart as big as the ocean.

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goin threw the same tryin to eat somewhat healthy and on bio meds still fighting this is the worse type of p

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I have had ppp for about 20 years now. Its better in the summer. I have tried lots of things - soriatane (helped, but I lost my hair), Enbrel (not much help & I got a really bad infection) and every kind of cream and ointment. The steroid ointment with plastic wrap helps, but never makes it go away. I have been taking Colcrys (a gout medication) for about 9 months. It really helped with that feeling of healing from within, but I recently had to quit because blood tests showed that my liver function was too high. I go back to the derm in two days. I am not optimistic on what comes next. My feet hurt really bad with cracks on the bottom and heal. I'll be wearing my slippers to work tomorrow.

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wow sounds terrible. I'm sure you've tried biotin. I've had some success with that and lactic pills or something. I live in Japan and there was a program with a popular actress that suffered from PPP. My new doc put me on anti biotics and antihistamins I think. It feels great knowing I'm not the only person with this crap.

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Sorry all you ppp suffers. Totally understand. Both feet on the bottoms, sides and back of heels and on my right palm and finger. Tried all kinds of meds and been on humira for 3 months now and last week started relapsing. I hate this painful, miserable disease. It has impacted my life to the point I had to and my dr fully agreed to put me on permenant social security disability. I am only 52 yrs old and since I have devloped this disease my life has totally changed not to mention dealing with the emotional aspect !. Just venting, so very frustrated having a relapse.

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it's true this disease is very anti social. the money and time spent is awful. But remember there are people out there with worse. I hope you can get along ok. Best wishes for you and anybody with this stuff. I heard it was a gut problem. But I get the feeling it has to do with pollens or something in the air. I live in Japan and it started here for me. When I go back to the states it gets better, there are a lot of people with skin diseaseshere in Japan. I sometimes see a guy that has atopic condition from head to toe. With welts and dry skin peeling off his face.
Google this. "Chiwako's story" This made sense to me because I've had 2 surgeries resecting my bowl. I started taking biotin and lactic someting and it helped. I've been on oral steroids for maybe 17 years, I stopped the roids 2 weeks ago and PPP is back. And other skin problems are surfacing. I'm going to try vitiman A and anything I can to get the right mix
Good luck to everyone.

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I have had it for about 20 years and I am now on Humira. It is helping greatly with my arthritis, and a little bit with my skin. One time, I went into complete remission while I was on an antibiotic for something else, but it didn't last. I am having a flare now because I had some oral surgery about a month ago, had to stop Humira for a few doses beforehand, and had a steroid injection along with a steriod dosepack after the surgery. The steroids have worn off, and it is flaring miserably at the moment. I have gotten approval to start up the Humira again, so hopefully it will calm down again. With this stuff, avoid steroids as much as possible! I couldn't avoid it this time, as I had to get the inflammation and pain from the oral surgery down to an acceptable level.

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Thanks, I keep hearing about Humira. Is it expensive? Any way hope your teeth look great and thanks again for the advice. Why are oral and topical steroids bad? congrats on your success

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I've got Plantar pustulosis as well. I've had pretty good luck using Cordran Tape. It's an Rx. I always wash my feet really well prior to applying the tape. I can usually get to a point where the bumps get cleared for a few days and keep my feet moisturized, but eventually it returns. I use Vaseline and wrap my feet in plastic at night. I was on Humira for 2 months (for Crohn's & Pyoderma) and had a terrible reaction. I had what is called a "paradoxical reaction. " The Humira brought on Psoriosis. I've been on Stelara since May 2012 and have been doing better.
Hope this helps.....

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I've had ppp for 30 years, but very mild. For the past 7-8 months my left palm has been flaring up. I love the Cordran Tape as it really works for me and after a week-10 days my skin looks completely normal...but the results don't last, the tape is very expensive and insurance usually won't cover it. I've been trying to get my insurance to cover it and today they will!!! I'm so excited to be able to get 3 small rolls per month covered. In England there is Haelan Tape (same ingredient) and also one can order it on-line.

I have also been using occlusion therapy on my feet, where I only have it very mild on the sides w/ a little peeling on the soles. I've just completed 2 nights of vaseline and last night on Clobetasol (corticosteroid cream). Everything looking very good!!

I'm scared to death to take oral steroids or biologicals (humira, stelara, embrel, etc.) Since joining this site a week and 1/2 ago, I've heard horror stories of ppp'ers who have stopped taking them and developed worse psoriasis and plaque psoriasis on other parts of their bodies. And of course, the longer you use them the more damage to organs and possibilities of cancer.

I just started taking Biotin, plant sterols, 3000 i.u. of Vit. D-3, 3000 grams of Omega 3, Coq10, Vit. A, C, E, B-complex, iron, zinc and selenium...whoooo! Am trying to strenthen my immune system!

PPP is an auto-immune disease, usually brought on by stress, smoking, surgeries, or a major life event. Most likely you have a close relative who has/had an auto-immune disease.

If anyone wonders if their skin disease is eczema or psoriasis you must see a derm for a biopsy...only way to tell for sure.

I'm sooooooo glad to meet others with ppp. I wish we had our own separate group, because ppp is one of the rarest forms of psoriasis and because it's on less than 10% of our bodies, there is extremely little clinical research done!!! And that really pisses me off.

P.S. In the past I've used the following creams/ointments: Dovonex, Clobetasol, Halobetasol, Climetrazine and a few others I've since forgotten.

Good luck everybody!!

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Dear valmeow, that is absolutly wonderful you have your ppp under control/improved !. I think it is great to hear stories of ppp and getting positive results :). Yes, I agree, so happy to have found this site/talk forum. Its nice and helps to be able to share your story with others who have ppp. My dr did tell me there is very little research done on ppp and even offered to show me the 15 pages that was research. Any how just want to tell all so glad to be able to share stories good or bad and just vent. You all are great listeners !

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Hello, again, yes - Humira is VERY expensive and in the US, most insurance will need proof (especially if you have only skin symptoms with no joint pain) that nothing else works. Along with the PPPP for many years, I was diagnosed with Psoriatic arthritis about a year ago. I had some very intense back pain along with costochondritis (inflammation of the sternum and sternum/rib joints), and exhaustion. It was actually very scary. Some call the condition "SAPHO Syndrome." Here is a description: http://en.wikipedia.org/wiki/SAPHO_syndrome . I should note, my oral surgery had nothing to do with TAKING Humira. I just had to stop in preparation of surgery as extra caution. I feel SOOOO much better. I had a horrible rebound effect for the first few doses for the few days leading up to the next dose, but that disappeared. My rheumatologist says they are finding out Humira does NOT increase the chances of lymphoma as previously thought. The simple fact that you have an auto immune disorder hikes the chances in itself. I recently came across this interesting article about it: http://www.dailyrx.com/humira-safety-profile-patients-rheumatic-and-crohns- disease-remains-consistent In the meantime, my hands are pretty clear, my feet are still bad but no longer blistered. My joints feel MUCH better, so much so, that I run about 2-3 miles almost every day. Please, if you start having odd aches and pains, or tendonitis, go to a rheumatologist. Also, my doctor told me, anytime I have any kind of imaging done, make sure to mention to the technician you have psoriasis, even if your skin is clear.

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so now I'm thinking this all about the gut. My twin brother (fraternal) has celiac disese. Does any one out there amongst us PPP people abstain from glutens with any luck?
Thanks,

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I've heard that many of us do abstain from gluten. I want to go to a food allergist to see if I'm allergic to anything in particular. I love dairy and many ppp'ers say to avoid that as well.

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Hi valmeveryone, thanks for the input. My doc gave me antibiotics and antihistamine and it's working a little. I'm using a strong cleanser as well. I keep thinking that this ugly skin thing is not as bad as other disease and it's better to be of the roids. So I'm feeling much more possitive these days thanks for the support.
Talk to ya later

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